A decade without data: Eating disorder researchers say a gap in CDC survey has left them flying blind

Eating disorders among youth have been on the rise since the pandemic started — adolescent wards in hospitals were full of patients with severe cases, and inpatient clinics saw dramatic rises in admissions. But researchers looking to investigate national trends over time are at a loss. For almost a decade, federal public health officials have not collected nationally representative data on disordered eating habits among young people.

“It’s a real gap in our public health systems to have no information on eating disorder symptoms,” said Bryn Austin, a professor and director of the Strategic Training Initiative for the Prevention of Eating Disorders at Harvard T.H. Chan School of Public Health.

It wasn’t always this way. The Centers for Disease Control and Prevention distributes a questionnaire every other year called the Youth Risk Behavior Surveillance System, and for many years it included three questions about disordered eating habits. Respondents were asked about the frequency with which they fasted, purged (by vomiting or laxatives), or took diet pills or medication in order to lose weight. But these questions were removed from the survey in 2015 in a bid for slots on the finite list of questions, making the most recent national data from 2013.

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“Eating disorders have a case fatality rate that’s among the highest of any mental health condition,” said Austin. “And yet the CDC is doing no surveillance.”

Austin and other researchers say that tracking those habits is critical to understanding how, when, and where eating disorders form. Eating disorders, which most often begin in the teenage years, could affect 9% of the general population in the U.S., according to estimates by Austin’s team at STRIPED. As early as 1998, eating disorders have been recognized as one of the most prevalent chronic illnesses in female adolescents. There are also significant racial disparities in the onset, diagnosis, and treatment of eating disorders. Eating disorders are deadly, and experts consider them a key part of overall public health.

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Yet historically, the YRBSS was the only source for nationally representative, comprehensive behavior data. While there are other large datasets, like Growing Up Today and Add Health, they either aren’t nationally representative, don’t track the same adolescent age group each year, overrepresent white and middle-to-upper class respondents, or don’t focus on the behaviors that researchers want information on. Without reliable nationally representative data, researchers must turn to localized surveys, datasets, or hospital admissions data for analysis.

The YRBSS questionnaire is designed so that students can answer all 89 questions within one 45-minute period during the school day, and tracks a variety of health behaviors among high school students. The CDC says they receive dozens of proposals to add, change, or delete certain questions each year from researchers, experts, and advocates. Every cycle, the agency assesses the submissions and creates a ballot with proposed changes for YRBSS coordinators who run the process in each state or district that offers the questionnaire.

The coordinators vote on the CDC’s proposed changes, which are “based upon emerging areas of interest for CDC and stakeholders,” a CDC representative said.

But well-funded fields of study may have more leverage as “stakeholders” to push for additional questions, which often requires connecting with individual YRBSS coordinators, lawmakers, and CDC to get their support.

Some researchers say they need the data they’re asking for in order to make that case.

“The eating disorder field has so many uphill battles to fight, that we’re so behind the epidemiology of other mental health conditions,” said Ariel Beccia, a Ph.D. candidate at the University of Massachusetts medical school who studies the epidemiology of eating disorders and disparities in prevalence related to gender and sexual orientation.  “We’re at the stage of trying to get data collected at all, which is very frustrating.”

In 2018, Beccia wrote a paper using YRBSS data through 2013. She submitted it to multiple journals but was rejected across the board without peer review; she was told the data were too old. She eventually published the research in a journal specific to eating disorders, but was frustrated that the lack of current data contributes to the topic’s reputation as a niche interest rather than an important public health issue.

That may be slowly shifting during the pandemic, when some studies — which used hospital data on admissions for eating disorders — signaled an increase in severe, diagnosed cases. The research available has led to more media attention on the issue, as have federal hearings on how social media platforms affect body image.

“It’s unfortunate that it takes even more people suffering for it to become an area of interest for other people, but I would say the pandemic has potentially increased interest,” said Samantha Hahn, a postdoctoral research fellow at the University of Minnesota who is advocating with Beccia and Austin for the inclusion of disordered eating questions on the YRBSS.

Austin has been pushing for years to get the three questions back on the questionnaire, in addition to a fourth question about the most prevalent disordered eating habit, binge eating. In 2017, dozens of members of Congress, including Sen. Amy Klobuchar (D-Minn.), Sen. Elizabeth Warren (D-Mass.), and the late Rep. John Lewis (D-Ga.), signed two letters to then-CDC director Brenda Fitzgerald, imploring her to put disordered eating questions back on the YRBSS.

Previously, Austin had heard multiple reasons that the questions were removed from the questionnaire. She says that once, off the cuff, somebody at the CDC told her that they “didn’t think that anybody would notice” if the questions were removed. In a 2017 response to the letters from Congress, Fitzgerald wrote that coordinators voted to remove the disordered eating questions in 2015 “to make room for questions of emerging public health interest (e.g., electronic vapor products).” The CDC declined to comment for this story on the disordered eating questions.

“I don’t think anyone’s trying to say, let’s put this on the backburner, it’s not serious,” said Alison Ivie of Center Road Solutions, a lobbying firm working with Austin and the Eating Disorder Coalition. “Congressional members can kick and scream all they want and make noise, but there’s a protocol that needs to happen.”

Proposals for questions on  the 2023 YRBS were due to the CDC on Dec. 1. Beccia and Hahn sent the official proposal to add four questions, co-signed by about a dozen researchers, advocates, and two YRBSS coordinators, from Rhode Island and Pennsylvania. The CDC now begins the process of evaluating the proposals, and will send a ballot with their recommendations to administrators to vote on in the spring, with all questions finalized by summer 2022.

Questions that are removed or not added can be included in a list of optional questions that survey sites may add. The disordered eating habit questions have been on the list of optional questions since 2015, but few sites can afford the administrative costs of adding additional questions.

The increase in attention on eating disorders due to the pandemic may help the proposal this time around, but researchers know there are myriad other health behavior issues exacerbated by the pandemic that may take precedence.

“I am cautiously, very cautiously, optimistic,” Hahn said.